Oral Cancer News
Compiled by The Oral Cancer Foundation

vaccine

The UK has announced that, after a great deal of pressure, it will be making the HPV vaccine available to teenage boys, potentially protecting them from a number of cancers.

The vaccine is routinely offered to teenage girls in schools. It has shown an impressive safety record while at the same time driving down cervical, oral and throat cancer rates by protecting young women from sexually transmitted HPV.

Campaigners have long said that teenage boys should also be provided the vaccine, because evidence has shown the HPV vaccine can reduce rates of oral, throat, penile and anal cancers. Unfortunately, Public Health England has taken some convincing on this issue, with a cash-strapped National Health Service having to make sure that every investment more than pays its way.

Now, the government says it believes the cost is far outweighed by the public health benefit.

Dr. Mary Ramsay, Head of Immunisations at Public Health England, is quoted as saying, “This extended programme offers us the opportunity to make HPV related diseases a thing of the past and build on the success of the girls’ programme, which has already reduced the prevalence of HPV 16 and 18, the main cancer-causing types, by over 80 percent.”

This change of course comes after the Joint Committee on Vaccination and Immunisation said earlier this month that, after careful review, it believed the HPV vaccination program should be extended to boys, as it found “gender-neutral vaccination is highly likely to be cost effective”.

HPV VACCINE’S SAFETY RECORD IS OVERWHELMING
While there have been some scare stories in the media relating to supposed side-effects from HPV vaccine, it’s important to note that the actual safety record for HPV vaccination is overwhelmingly good.

In fact, a meta-analysis of studies involving over 70,000 women demonstrated that of the 14 deaths per 10,000 that occurred around the time of vaccination, not a single one could be directly linked to the vaccine.

Like every live vaccine, there is the potential for some side effects. HPV vaccine’s side-effects are, for the most part, mild. If a person does have an adverse reaction, it is likely to manifest in localized swelling, a rash, or feelings of fatigue or nausea — all of which will subside on their own within a day or two.

Again, like any medication, there is the potential for more serious side-effects. However, for the HPV vaccine the chances of this happening are incredibly low. The NHS puts it at less than one out of every million cases for reactions like anaphylaxis.

Ah, but aren’t there studies linking HPV to various conditions like fibromyalgia? There have been such small-scale studies. None have found a convincing link, and their size and quality pale in comparison to the data we have to support that, for most women, the vaccine is safe and effective.

It may well be that for a tiny minority of people, the vaccine could present a risk, but that possibility is neither confirmed nor does it outweigh the manifest benefit. The HPV vaccine is thought to save thousands of lives per year globally by preventing cervical cancer deaths.

In short, the weight of not just national but global evidence points to the HPV vaccine saving lives and doing so safely.

WHY THIS MOVE WILL PROTECT GIRLS AS WELL AS BOYS
The fact that the vaccine will protect boys from cancer is, for many, motivation enough to say that the vaccine should be provided to teenage boys.

However, in addition to that, protecting boys from HPV has a knock-on effect for girls. That’s because it cuts down the circulating HPV strains that cause cancer for young women. This means that those young woman who cannot have the vaccine due to their medical history or current conditions will benefit from herd immunity.

It’s estimated that HPV16 and HPV18 circulation has already gone down by 80 percent in the UK as a result of the vaccination program.

In this way, not only are we seeking to eradicate the incredibly common HPV strains, we are also helping to cut our children’s cancer risk. The UK is among the first group of nations to offer the HPV vaccine to both girls and boys, and it is hoped that other nations will follow.

Scott Courville admired his full beard and round belly in the mirror: He was ready for the upcoming holiday season. It was November 2015 and Courville, who plays Santa Claus in Lafayette, Louisiana, was too excited about his favorite time of year to worry much about the pain developing in his jaw.

By February, though, the ache had worsened and was accompanied by new symptoms: white spots on his right tonsil, difficulty swallowing and lumps in his throat. He finally made his way to a walk-in clinic where he was diagnosed with tonsillitis and prescribed antibiotics.

“They sent me home and said, ‘In two weeks everything should clear up,’” Courville recalled.

But his symptoms only worsened. Courville made an appointment with a local ear, nose and throat (ENT) specialist who also diagnosed Courville with tonsillitis. The doctor prescribed more antibiotics and steroids, but two weeks later there were no improvements. Courville was referred to a dentist—“In case they see something we don’t”—but that, too, was a dead end.

Courville’s dentist insisted he return to his ENT, where he ultimately had a CT scan that revealed a mass in his throat. That was June 6, 2016. Two days later, Courville underwent a biopsy. When he awoke from the surgery, his doctor was standing over him.

Courville always gets choked up retelling this part of his story.

“The hardest part for me is always remembering when the doctor said, ‘I’m sorry, but you’ve got cancer.’”

Courville was referred to The University of Texas MD Anderson Cancer Center, where doctors confirmed that he had squamous cell carcinoma of the right tonsil. But there was more: Courville learned that his cancer had been caused by the human papillomavirus—HPV.

11 million men
Courville’s story is becoming increasingly common, with the annual incidence of HPV-related cancers of the throat, tonsils and the base of the tongue in men in the United States now outnumbering cases of cervical cancer in women, according to the U.S. Centers for Disease Control and Prevention (CDC). A 2017 research paper authored by scientists at Baylor College of Medicine and The University of Texas Health Science Center at Houston School of Public Health, among others, found the overall prevalence of oral HPV in men in the U.S. to be upwards of 11 million—much higher than previously believed.

“This has implications, because pretty much everyone is exposed to HPV,” said Andrew Sikora, M.D., Ph.D., one of the authors of the paper and vice chair for research and co-director of the Head and Neck Cancer Program at Baylor College of Medicine. “When we’re talking about the prevalence of oral HPV infection, we’re talking about that infection persisting inside the tonsils or on the base of the tongue of these men, and I think that’s what sets you up for cancer later in life—it may happen decades after you were exposed to HPV.”

That lag time, coupled with an absence of symptoms, is part of the reason HPV-related oropharyngeal cancers, also referred to as head and neck cancers, are increasing.

“What makes this cancer interesting is that it’s one of the only cancers in the body that we’re actually seeing more cases of year over year,” explained Ron J. Karni, M.D., who serves as chief of the division of Head and Neck Surgical Oncology at McGovern Medical School at UTHealth and Memorial Hermann-Texas Medical Center. “In the U.S., we can expect a certain number of breast cancer cases and lung cancer cases every year, but this is actually starting to look a bit like an epidemic in that we are seeing more every year. It’s alarming.”

Holy grail
HPV is the most common sexually transmitted disease in the U.S., with an estimated 79 million individuals infected. According to the CDC, HPV is so common that most people who are sexually active will get the virus at some point in their lives if they do not get the HPV vaccine.

The virus is spread through vaginal, anal and oral sexual activity, and often exhibits no signs or symptoms. In many cases, HPV is cleared by the immune system and does not cause health problems, but it can also persist and show up decades later alongside conditions such as genital warts and cancer—including cervical cancer, anal cancer and oropharyngeal cancers. For reasons not well understood, oropharyngeal cancers predominately affect men.

Currently, there is no annual screening test for men to determine whether they have the virus. Women, on the other hand, are advised to get regular pap smears.

The Papanicolaou test, commonly known as the pap smear, involves collecting cells from inside a woman’s cervix to detect pre-cancerous changes. It is performed during a woman’s annual exam and has been widely credited for detecting early signs of HPV-related cervical cancer and saving countless lives. No such screening test has been successfully developed for oropharyngeal cancer—another reason cited for its steady rise.

“We’re at a huge disadvantage,” said Sikora, who, in addition to his research, treats patients at the Michael E. DeBakey VA Medical Center in Houston. “The pap smear, in terms of global health impact, is probably one of the best, most cost-effective things ever invented in terms of just the sheer number of women who have not had cancers because of it. We have nothing like that for men.”

Sikora explained that anatomy is, in part, to blame. Whereas the cervix is easily sampled, the tonsils are full of “nooks and crannies,” he said, and scientists have yet to develop a reliable technique for obtaining a representative sample of cells inside the throat, tonsils and back of the tongue.

“It’s sort of a holy grail for researchers in the field,” Sikora said. “It would be a game-changer in terms of prevention and early detection of cancer.”

Scientists at MD Anderson, where Courville was treated, may be closing in on some answers. Researchers, including Erich M. Sturgis, M.D., MPH, the Christopher & Susan Damico Chair in Viral Associated Malignancies, are currently conducting a clinical trial for an antibody test that could be used to screen for HPV-related throat cancer.

The HOUSTON study, an acronym for “HPV-related Oropharyngeal and Uncommon Cancers Screening Trial of Men,” is looking to recruit 5,000 men ages 50 to 64 years to provide blood and saliva samples for serologic HPV testing and oral HPV testing, respectively. If a subject is found to have a positive antibody test, he will be asked to participate in a second phase of the study, which includes an intensive screening program run through MD Anderson’s oral pre-cancer clinic.

“A researcher at Arizona State University, Dr. Karen Anderson, developed a serologic test that predicts extremely well the risk for HPV-related oropharyngeal cancer,” Sturgis explained. “We have been able to show that serum antibodies to HPV early proteins, which are rare in the general population, are markers for oropharyngeal cancer. Specifically, we found that those who had antibodies to certain HPV antigens have a greater than 450-fold higher risk of oropharyngeal cancer compared with those who do not have the antibodies.”

The hope is that this study will reveal that serological HPV antibody testing is an effective screening tool for HPV-related cancer in men: the equivalent to a pap smear.

A lump in the neck
If and when HPV-related cancer does develop, men often notice a pain in their jaw or throat, trouble swallowing, change or loss of voice that lasts more than a week or two, a sore spot on the tongue and, most often, a lump in the neck.

“There’s often a very small, primary tumor, which is the tumor that is in the tongue or in the tonsil, and it travels early to the lymph nodes,” Sikora explained. “Depending on what your neck looks like, lymph nodes can get pretty big before they become noticeable. But a lump in the neck is by far the most common symptom, and unfortunately it’s often detected much later than we would like.”

Even more troubling, many individuals who have these symptoms are commonly misdiagnosed and handed antibiotics, as in Courville’s case.

“The most important message I can convey is that if you have a lump in your neck, go see an ear, nose and throat doctor,” Karni said, emphasizing the importance of an informed diagnosis and specialized care.

Treatment for oropharyngeal cancers varies depending on the case and often involves a multidisciplinary team of clinicians, as well as some form of combined modality therapy such as radiation and chemotherapy. In the future, Sturgis sees novel therapies, including immunotherapy options, changing the landscape of treatment protocols.

Karni hopes UTHealth’s dedicated HPV-related throat cancer program will carry patients through the entire arc of treatment by offering minimally invasive robotic surgery for qualifying cases, as well as annual community-wide screening clinics, rehabilitation therapists, and numerous other specialists.

“We want to think about cancer the way Target thinks about shopping or the way the best airlines think about flying,” Karni said. “We designed a program that is patient-centered. We asked, ‘What does the patient need on their fourth week of radiation? What do they need on their third month post-radiation? How can we get that into one clinic space?’ It’s a large team and it’s all centered around this one disease.”

47th in the nation
In 2006, an HPV vaccine named Gardasil hit the market. It was originally intended to prevent HPV in females and, ultimately, HPV-related cervical cancer. But as scientists learned more about HPV—first that males could be carriers and later that it causes cancer in men, as well—public health professionals and clinicians unanimously recommended the vaccine to everyone. The CDC recommends all young women through the age of 26 and all young men through age 21 receive two doses for the vaccine to be effective.

And it is. A recent report published in May by Cochrane, a global independent network of clinical researchers and health care professionals, concluded that the HPV vaccine protects against cervical cancer in young women, especially when they are vaccinated between the ages of 15 and 26.

Which begs the question: Will the vaccine protect young men against the development of oropharyngeal cancers?

“There is a lot more data on cervical cancer in women and the vaccine than there is on head and neck cancer in men and the vaccine, but what data exists suggests that it is going to be a very effective intervention,” Sikora said.

Yet despite scientific evidence that prophylactic HPV vaccination of children and young adults will drastically reduce HPV-related cancers, vaccination rates in the U.S. remain alarmingly low—and Texas ranks 47th. Even more, several generations did not have the vaccine available to them and are currently at risk for HPV-related cancer.

As Karni said, it is alarming.

“Because the median age of oropharynx cancer related to HPV is about 55 and, in some studies, 60, and because the vaccine does not seem to work in individuals who have already been exposed, the benefits of vaccination on HPV-related cancer will not be realized for several decades,” Sturgis said. “Even if we vaccinate 100 percent of our boys and girls tomorrow, we have a whole generation or two who are at risk for this cancer and cannot do anything about it.”

Courville endured six rounds of chemotherapy and 33 daily rounds of radiation to treat his cancer. He lost a year of his life, 100 pounds, his taste buds and salivary glands, and can no longer grow his full beard— but his therapy was successful. He has now made it his life’s mission to inform the public about the importance of the vaccine as well as ongoing advocacy and research surrounding HPV-related cancers.

“If you can educate the public and educate the parents, they will vaccinate their kids,” Courville said. “And if we can vaccinate this generation, we could eliminate these types of cancers.”

It is likely a surprise to many people that there has always been an anti-vaccine movement. It isn’t something new that was created by Jenny McCarthy and Bob Sears.

18th Century Anti-Vaccine Movement

In fact, the anti-vaccine movement essentially predates the first vaccine.

Edward Jenner’s first experiments with a smallpox vaccine began in 1796.

Even before that, variolation as a technique to prevent smallpox was practiced for centuries in many parts of the world, including Africa, China, India, and the Ottoman Empire.

In fact, Onesimus, his African slave, taught Cotton Mather about the technique in 1706.

Lady Mary Wortley Montagu introduced inoculation to England, having learned about the practice in Turkey. As she encouraged others to inoculate and protect their children against smallpox, including the Royal Family, there was much debate. It is said that “Pro-inoculators tended to write in the cool and factual tones encouraged by the Royal Society, with frequent appeals to reason, the modern progress of science and the courtesy subsisting among gentlemen. Anti-inoculators purposely wrote like demagogues, using heated tones and lurid scare stories to promote paranoia.”

Were those the first vaccine debates?

19th Century Anti-Vaccine Movement

Eventually, Edward Jenner’s smallpox vaccine replaced variolation.

Even though this was much safer than the previous practice and smallpox was still a big killer, there were still those who objected.

Much of the resistance may have come because getting the smallpox vaccine in the UK in the 19th century was compulsory—you had to vaccinate your children or you would be fined, and the fines were cumulative.

The Anti-Vaccination League was created shortly after the passage of the Vaccination Act of 1853.

Another group, the Anti-Compulsory Vaccination League, was founded after the passage of the Vaccination Act of 1867, which raised the age requirements for getting the smallpox vaccine from 3 months to 14 years old.

There were anti-vaccination leagues in the United States, too.

That they actually called them “anti-vaccine” is one of the only big differences between these groups and the modern anti-vaccine movement.

They even had some celebrities join the anti-vaccine movement, including George Barnard Shaw, who also believed in homeopathy and eugenics.

20th Century Anti-Vaccine Movement

Anti-vaccine groups didn’t change much in the 19th and early 20th Century.

That’s perhaps not too surprising, as after Jenner’s smallpox vaccine, it would be almost 100 years before another vaccine was developed—Louis Pasteur’s vaccine against rabies in 1885.

And it was more than 50 years before the American Academy of Pediatricsformally approved the use of a pertussis vaccine (1943).

Over the next few decades, the other vital vaccines that we know today were developed, including the DPT vaccine, polio vaccines, and MMR, etc.

Of course, the anti-vaccine movement was alive and well during this time, using all of the same tactics.

In 1973, John Wilson and M. Kulenkampff reported on 50 children seen over 11 years at the Hospital for Sick Children in London. He reported on a clustering of neurological complications in the first 24 hours of the kids getting their DPT shot, even though his team didn’t actually see the children for months or years later.

In 1974, they reported the findings of 36 of these children in the Archives of Diseases in Childhood.

As with a later report by Wakefield, media coverage of this small study led to fear of vaccines and lower immunization rates. John Wilson even appeared on “This Week,” a prime-time TV show in the UK. The consequences were not unexpected. In addition to a large outbreak in England, with at least 100,000 cases and 36 deaths, there were pertussis outbreaks and deaths in Japan, Sweden, and Wales after this study. Pertussis deaths in the UK were likely underreported, though, and some experts think that the actual number of childhood deaths was closer to 600.

While many people think that Lea Thompson’s “DPT: Vaccine Roulette” in 1982 helped create the modern anti-vaccine movement, it should be clear that others had a hand.

This was also the time that Dr. Robert Mendelsohn, a self-proclaimed “medical heretic” and one of the first anti-vaccine pediatricians, became infamous for writing “The Medical Time Bomb of Immunization Against Disease” and making the rounds on the talk shows of the day. Mendelsohn also was against adding fluoride to water and “coronary bypass surgery, licensing of nutritionists, and screening examinations to detect breast cancer.”

Lea Thompson’s show did prompt Barbara Loe Fisher and a few other parents to form the group Dissatisfied Parents Together (DPT). And from there we got her book, “A Shot in the Dark,” that had such a great influence on Dr. Bob Sears, and the eventual formation of the National Vaccine Information Center.

And since excerpts of “DPT: Vaccine Roulette” even ran nationally on the Today Show, it likely influenced a lot more people.

Next came accusations that the DPT vaccine caused SIDS. And that the hepatitis B vaccine causes SIDS. Barbara Loe Fisher was in the middle of many of these accusations, even testifying before Congress.

And while she was certainly not the first anti-vaccine celebrity, this was the time (1990) when Lisa Bonet of The Cosby Show fame went on The Donahue Show and said that vaccines could “introduce alien microorganisms into our children’s blood and the long-term effects which could be trivial or they could be quite hazardous – and they could just be allergies or asthma or sleep disorders or they could be cancer, leukemia, multiple sclerosis, sudden infant death syndrome. It’s very scary and it’s very serious, and I think because I felt wrong doing it…that’s why I didn’t do it. You know we have to think twice. You know why are our kids getting these diseases?”

A few years later, in 1994, the first deaf Miss America was crowned, with her mother blaming the DPT vaccine for her child’s deafness. Like many other vaccine-injury stories, Heather Whitestone’s story wasn’t what it seemed. Her pediatrician quickly came forward and set the record straight—she was deaf because of a life-threatening case of Hib meningitis and the subsequent treatment with an ototoxic antibiotic. It took several days for the media to run the corrected story, though.

Born in 1973, it would be another 15 years before the first Hib vaccine was approved and began to be routinely given to children. The DPT vaccine, which has never been shown to cause hearing problems, had nothing to do with Heather Whitestone’s deafness. It certainly didn’t stop anti-vaccine groups from using her initial story and the media coverage to scare parents about vaccines, though.

This is about the same time that Katie Couric did a segment on the NBC News show Now with Tom Brokaw and Katie Couric about DPT “hot lots.”

But of course, things didn’t really get moving in the modern anti-vaccine movement until the 1998 press conference for Andrew Wakefield’s study, when he said that “that is my feeling, that the risk of this particular syndrome developing is related to the combined vaccine, the MMR, rather than the single vaccines.”

ABC’s 20/20 even got in on the anti-vaccine misinformation, raising “serious new questions about a vaccine most children are forced to get” in their 1999 episode “Who’s Calling the Shots?”

The media didn’t take as big an interest in the fact that:

a series of lawsuits in England which were brought against the manufacturers of the DPT vaccines claiming they caused children to develop seizures and brain damage all found that the DPT vaccines did not cause vaccine injuries

a 1991 IOM report which concluded that the evidence doesn’t indicate a causal relationship between DPT and SIDS and there was insufficient evidence to suggest a causal relationship between DPT and chronic neurological damage and many other disorders

many cases of alleged vaccine encephalopathy secondary to the DPT vaccine were in fact caused by Dravet syndrome

It should even be considered “media malpractice” that they didn’t correct all of the misinformation in the Vaccine Roulette piece.

21st Century Anti-Vaccine Movement

The anti-vaccine groups in the 21st Century aren’t that much different from their 19th Century counterparts. They still:

say that vaccines will make you sick

blame Big Pharma

warn about poisonous chemicals and toxins in vaccines, although they continue to shift which chemicals they worry about, moving from thimerosal to formaldehyde and aluminum, etc.

say that Jenner’s smallpox vaccine didn’t work and neither do any of the other ones

One difference is that instead of a few people writing pamphlets with their anti-vaccine ideas, like they did in Boston in 1721, now anyone can reach a lot more people by starting their own website or blog, posting in message boards, writing a book, or getting on TV, etc.

Another is that even more than the late 20th Century, we saw a great rise in the media scaring parents about vaccines in the last 10 or 15 years, including:

Matt Lauer and his hour-long Dateline episode, A Dose of Controversy, with Andrew Wakefield himself

Robert DeNiro on the Today Show in 2016

This is also the time when we saw the rise of the celebrity anti-vaccine spokesperson and the pandering pediatricians.

And we should have seen them coming. We were less than a week into the year 2000 when Cindy Crawford appeared on Good Morning America with her celebrity pediatrician, Dr. Jay Gordon.

But what’s really different today? Although the great majority of people still vaccinate their kids, clusters of intentionally unvaccinated children are certainly on the rise. And it is these clusters of unvaccinated kids and adults that are leading to a rise in outbreaks of vaccine-preventable diseases that are getting harder to control.

One thing that may be different now is that more people have grasped on to the Natural is the new Medicine movement. From amber necklaces and essential oils to sports magnets and homeopathic “medicines” on pharmacy shelves, these things go hand in hand with the modern anti-vaccine movement.

In addition to pandering pediatricians who push non-standard, parent-selected, delayed protection vaccine schedules, we now have more and more chiropractors, naturopaths, holistic pediatricians, and integrative pediatricians who might advise a parent to skip vaccines altogether. And with Dr. Oz on TV pushing a lot of these types of holistic remedies on TV every day, it probably does seem like an OK thing to do.

Big natural remedy websites that also push everything from organic food to medical conspiracy theories also provide a lot of fodder for anti-vaccine folks. Many others push fear about chemicals, so it isn’t surprising that it would be easy to scare parents about vaccines.

But still, it is important to keep in mind that these things have not become mainstream, it is just that the anti-vaccine movement has become a big business. From selling vitamins, supplements, e-books, e-courses, and holistic treatments to pushing for new laws ensuring that kids can stay intentionally unvaccinated and unprotected, they are the very vocal minority.

Jason Mendelsohn was diagnosed with Stage 4 tonsil cancer from HPV in 2014 after finding just one bump on his neck. He survived thanks to a variety of treatments, including a radical tonsillectomy and neck dissection to remove 42 lymph nodes, seven weeks of chemotherapy, radiation and a feeding tube.

But if Mendelsohn’s cancer had been discovered today, just four years later, it would have been classified as Stage 1. That’s because HPV-related oral cancers now have a high survival rate through a better response to treatment, said Meryl Kaufman, a speech pathologist specializing in head and neck cancer management who worked for Emory University’s department of head and neck surgery for 10 years.

“Cancer staging is taking into account the HPV-related cancers,” said Kaufman, who now owns her own practice. “It was kind of all lumped together. The survival rates for people who have HPV-related cancers are much higher than the typical head and neck cancers associated with smoking and drinking.”

For Mendelsohn, finding out that patients with HPV-related cancers likely face easier treatments and higher success rates made him extremely happy.

“If I was diagnosed and I heard Stage 1 instead of Stage 4, while it’s still cancer, it would make me feel like I could beat it,” said Mendelsohn, who made a video for his children a month after his diagnosis with advice for their lives after he was gone. “When I hear Stage 4 to Stage 1, I think people have hope they can beat it. My hope is that it will give people hope that they can beat this.”

As a cancer survivor, the Florida resident wants to give hope to other patients. He talks to people throughout the world every month and is creating a worldwide survivor patient network to connect cancer survivors with patients.

“While cancer is scary, Stage 1 is a lot less scary than Stage 4,” Mendelsohn said. “Stage 4 was overwhelming. When I was looking for information, there was nothing out there that made me feel like I was going to be OK. What I’m trying to do is give people hope and let them know that it’s all temporary.”

Another way Mendelsohn is trying to reach those affected by cancer is through his website, supermanhpv.com. He shares his story, news articles featuring him and oral cancer caused by HPV, and information for survivors, patients and caregivers.

The site also features Mendelsohn’s blog, putting himself out there so people can see that someone who, just four years ago, was diagnosed with Sage 4 cancer is now a Peloton-riding, travel-loving cancer advocate.

“People see me and say (they) can’t believe (I) had cancer three to four years ago,” Mendelsohn said. “I was in bed 18 hours a day for a month. I was choking on my saliva for a month. I was consuming five Ensures a day and two Gatorades a day through a feeding tube in my stomach. If people going through that can see me working out, going on the bourbon tour in Louisville. I’ve been on an Alaskan cruise. I’ve been to the Caribbean. I’ve been to the Grand Canyon.”

Mendelsohn, who started his campaign to raise awareness of HPV and oral cancer by raising money for the Ride to Conquer Cancer in Washington, now serves on the board of the Head and Neck Cancer Alliance. The organization’s goal is to advance prevention, detection, treatment and rehabilitation of oral, head and neck cancers through public awareness, research, advocacy and survivorship.

“I feel like it’s gone from me raising money for a bike ride to me on two boards helping create awareness and raise inspiration and creating a survivor patient network,” Mendelsohn said. “Now it’s not about me and my three doctors. Now it’s about helping people with diagnosis globally. There are great doctors. I think we’re going to do great things.”

One way to help prevent children from getting cancer caused by HPV when they grow up is the Gardasil vaccine, which protects against HPV Strain 16, which causes oral cancer. Mendelsohn said 62 percent of college freshmen and three-quarters of adults by age 30 have HPV.

But he doesn’t tell people to get the vaccine. Instead, he advises parents to talk to their kids’ doctors about the benefits and risks.

“I talk about the importance of oral cancer screenings when they’re at the dentist,” he said. “And if you feel a bump on your neck, go to your ENT. I had no symptoms and just a bump on my neck, but I was diagnosed with Stage 4. I’ve had so many tell me that they didn’t know the vaccine is for boys. They thought it was just for girls.”

Kaufman said that the HPV vaccine is recommended for use in boys and girls and that it’s important for the vaccine to be given before someone becomes sexually active. The vaccine won’t work if a person has already been exposed to HPV, as most sexually active adults have been, she said.

Men are much more likely to get head and neck cancer from HPV.

“Usually your body fights off the virus itself, but in some people it turns into cancer,” Kaufman said. There hasn’t been specific research that the HPV vaccine will protect you from head and neck cancer, she said, “but if you’re protected against the strains of HPV that cause the cancer, you’re probably less likely to get head and neck cancer.”

Treatment for this cancer isn’t easy, Kaufman said. Radiation to the head and neck can affect salivary glands, which can cause long-term dental and swallowing issues. Treatment can affect the skin, taste and the ability to swallow.

“A lot of people have tubes placed,” she said. “It’s not easy. It depends on how well you respond to the treatment.”

While getting the vaccine can help protect against various cancers, awareness about head and neck cancer is the key. And knowing the signs and symptoms — such as sores in the mouth, a change in voice, pain with swallowing and a lump in the neck — is important.

“If one of those things lasts longer than two weeks, you should go to your doctor,” Kaufman said. “This can affect nonsmokers and nondrinkers. It’s not something that people expect. The more commonplace it becomes and the less stigma, the better.”

Doctors and health professionals are regularly paying hundreds of pounds for their teenage sons to receive a vaccination against cancer that girls already receive for free on the NHS, the Victoria Derbyshire programme has been told. Is boys’ health being put at risk?

“Had the HPV vaccine been available when I was a boy, I believe I would not have developed throat cancer more than 30 years later,” said Jamie Rae, 53.

“I’m basing this on the overwhelming majority of research I have seen over the years and countless experts I have spoken to.

“That’s why I’m desperate for boys to be able to receive it.”

HPV is the name given to a large group of viruses. It is very common and can be caught through any kind of sexual contact with another person who already has it. Doctors say 90% of HPV infections go away by themselves – but sometimes infections can lead to a variety of serious problems. For boys, this includes cancer of the anus, penis, mouth and throat.

Since 2008, girls aged 12 to 18 across the UK have been offered HPV vaccinations as part of the NHS childhood vaccination programme. It is currently not offered to boys of the same age, but it can be done privately, costing several hundred pounds.

Mr Rae founded the Throat Cancer Foundation after the treatment he received in 2010. He said at the time there was little information on HPV and he did not want anyone to go through his experience.

“I had radiotherapy for 35 days except weekends. I felt extreme burning in my neck and mouth and I was covered in sores. The pain was excruciating,” he explained. “It’s a lengthy recovery time. You have to teach yourself to swallow again and you get a dry mouth all the time.”

His foundation is part of HPV Action – which represents more than 50 groups and charities that are calling for both genders to receive the vaccination on the NHS.

‘Indefensible’
Mr Rae said the current disparity between boys and girls was “appalling”.

“Lots of doctors are having their boys vaccinated because they can afford it, as are those who are better informed,” he said. “But what about those who can’t afford it? Cases of throat cancer are soaring. It’s indefensible.

“Every day that goes past where boys are not being vaccinated condemns them to a whole host of diseases that we could prevent.”

HPV Action says around a dozen countries including Australia, Canada and the US are already vaccinating boys or are planning to do so in the near future. The government’s vaccination advisory committee is currently reviewing whether boys should receive the HPV vaccination.

A spokesperson for the Department of Health and Social Cares says it will carefully consider its advice once they’ve received it. Campaigners hope there will be a decision this year, possibly as soon as June. A debate is taking place on Wednesday at Westminster Hall about the issue.

The argument for vaccinating boys against HPV:

About 15% of UK girls eligible for vaccination are currently not receiving both doses, a figure which is much higher in some areas

Most older women in the UK have not had the HPV vaccination

Men may have sex with women from other countries with no vaccination programme

Men who have sex with men are not protected by the girls’ programme

The cost of treating HPV-related diseases is high – treating anogenital warts alone in the UK is estimated to cost £58m a year, while the additional cost of vaccinating boys has been estimated at about £20m a year

As a molecular epidemiologist, I’ve been conducting research on human papillomavirus (HPV)-related cancers since my dissertation work in 2003. While working with the clinical faculty here at Baylor College of Medicine, I’ve heard many questions lately about the possibility of the HPV vaccine “helping treat” head and neck cancer (HNC).

It’s important to know the link between HPV and HNC because patients with HPV-positive tumors often have better survival rates than those with HPV-negative tumors. Check out these frequently asked questions to learn more about HPV and HNC.

What is HPV?

HPV is a sexually transmitted infection that can infect the oral cavity, tonsils, back of throat, anus, and genitals.

There are many types of HPV. Some types can cause cancer and other types can cause warts.

HPV infection is very common in the U.S. with more than 50 percent of adults being infected at some point in their lifetime.

There is no treatment for HPV infection.

For some people, their HPV infection naturally clears while others develop cancer after many years.

What is oropharyngeal cancer?

Oropharyngeal cancer occurs in the tonsils and back of throat.

In the U.S., HPV now causes most oropharyngeal cancers.

Most doctors would recommend that oropharyngeal cancers be tested for HPV.

Smoking and alcohol use can also increase risk of developing oropharyngeal cancer.

How did I get HPV infection in my mouth or throat?

The most likely route of exposure is by oral sex, although other routes may exist.

Five years ago, when actor Michael Douglas candidly revealed that his throat cancer was linked to having oral sex, two things happened.

He made headlines that mortified his family. And he helped publicize the fact that a pervasive, sexually transmitted virus called HPV was unleashing an epidemic of oral cancer among men.

Since then, scientists have made headway in figuring out why HPV, the human papillomavirus, has this glaring gender bias. Men are four times more likely than women to be diagnosed with oral cancer, a hard-to-detect, hard-to-treat disease that has overtaken cervical cancer as the most common HPV-related malignancy in the United States.

To be sure, changes in sexual norms over the last few generations have played a role in this alarming trend. But research increasingly shows the real problem is something men have practically no control over: their immune response.

Compared with women, men are more likely to get infected with HPV — including “high-risk” cancer-causing strains. They also are less able to wipe out infection on their own, and more likely to get reinfected. The reasons are unclear.

“There is good evidence that men acquire oral infections more readily than women, even if they have similar sex practices,” said Ashish A. Deshmukh, a University of Florida HPV researcher. “And more than the acquisition, it’s the persistence of the virus. The clearance rate is not that fast in men.”

Michael Becker of Yardley has stepped up as the face of this immunological inequity. The 49-year-old former biotech executive is health-conscious, clean-living, happily married for 26 years – and battling terminal oropharyngeal cancer, the medical term for malignancies in parts of the mouth and throat.

He’s also battling the misconceptions and ignorance that keep too many parents from protecting their pubescent children — especially boys — against HPV-driven cancers. Two shots. That’s all it takes for the leading vaccine, Gardasil, to prevent most cervical cancers, less common genital malignancies, and the disease that is killing Becker.

“I can’t tell you how many emails I got from parents after the CBS segment,” he said, referring to a national television interview last month. “They said, ‘What do you mean this vaccine is for boys?’ and ‘What do you mean oral cancer incidence has eclipsed cervical cancer?’ ”

An inescapable virus
HPV is a family of more than 100 virus types that can live in the flat, thin cells on the surface of the skin, cervix, vagina, anus, vulva, penis, mouth, and throat. The virus is spread through contact with infected skin, mucous membranes, and bodily fluids. Some types can be passed during intercourse or — as Douglas pointed out — oral sex. While virtually all sexually active people will get infected at some point, the virus is usually wiped out by the immune system without so much as a symptom.

But not always.

In the cervix, persistent infection with high-risk HPV types can lead to precancerous changes that, left alone, slowly turn malignant. Fortunately, the Pap smear enables the detection and removal of abnormal cells before cancer develops. What’s more, age-related changes in cervical cells reduce the risk that HPV will take hold there as women get older.

No such screening test exists for oropharyngeal sites – the tongue, soft palate, tonsils, the throat behind the nasal cavity – and symptoms usually don’t appear until cancer is advanced. Becker, for example, had metastatic disease by the time he noticed a lump under his jaw line in late 2015.

Traditionally, smoking and heavy alcohol use are the big risk factors for oral cancer, but the non-HPV tumors linked to these bad habits have been declining in recent years. HPV-related tumors, in contrast, have increased more than 300 percent over the last 20 years. The virus is now found in 70 percent of all new oral cancers.

About 13,200 new HPV oral cancers are diagnosed in U.S. men each year, compared with 3,200 in women, according to federal data. Treatment — surgery, chemotherapy, radiation — can have disfiguring, disabling side effects. About half of late-stage patients die within five years.

Natural defenses go awry
Oral HPV infection rates are skewed by gender, just like the resulting cancers. The latest national estimates of this disparity, published in October, come from Deshmukh and his University of Florida colleagues. They used a federal health survey that collected DNA specimens to estimate that 7.3 percent of men and 1.4 percent of women have oral infections with high-risk HPV types. That translates to 7 million men and 1.4 million women.

The chance of oral infection increases for women as well as men who have simultaneous genital HPV infections or a history of many sex partners, but male infection rates still far surpass female rates.

Patti Gravitt, an HPV researcher at George Washington University, believes these estimates are a bit oversimplified because women counted as uninfected may actually have undetectably low virus levels, or HPV may be hiding in a dormant state in their cells.

Still, Gravitt said the study is in line with others that suggest “men are more susceptible to HPV viral infection than women.”

In women, an HPV infection usually sets off the body’s defense mechanisms. The immune system makes antibodies that kill off the invader, then immune cells remain on guard, ready to attack if the virus reappears.

But in men, something goes awry. The HIM study — for HPV in Men — documented this by collecting genital, anal, and oral samples from 4,100 unvaccinated men in Florida, Mexico and Brazil between 2005 and 2009. The samples were tested for the presence of two high-risk HPV types and two that cause genital warts.

Among 384 men who developed infections during a 24-month period, only 8 percent produced antibodies. But this response rate varied depending on the site of infection; none of the small number of orally infected men produced antibodies.

Rather than putting the immune system on guard and protecting men from the virus, infection sharply increased the chance of getting infected again with the exact same HPV type. And many men who got reinfected were celibate at the time.

How could this be? Anna R. Giuliano, the researcher at the Moffitt Cancer Center in Tampa, Fla., who led the HIM study, said recurring infections may be due to reactivation of dormant virus, or to auto-inoculation – the man spreads infection from one part of his body to another. Or to something else entirely.

While the scientific understanding of this puzzle is evolving, one implication is clear. “HPV vaccination is the only reliable method to ensure immune protection against new HPV infections and subsequent disease in males,” Giuliano and her co-authors declared in a recent paper.

Becker hammers that message – when he is not being hammered by chemotherapy – using his self-published memoir and his blog. This week’s blog gave a shout-out to Sunday’s first-ever International HPV Awareness Day, declared by Giuliano and other members of the International Papillomavirus Society.

Becker realizes that the novelty of the vaccine, the complexity of HPV, and its link to sex are obstacles to immunization. But he focuses on the life-saving aspect.

“Parents are being asked to vaccinate their 11-year-old child and they can’t imagine 30 or 40 years down the line, it will prevent cancer,” Becker said. “If you don’t know it’s connected to six cancers, you’re not going to care. So it really should be cast as an anti-cancer vaccine.”

A joint study by the Hartford HealthCare (HHC) Cancer Institute and the Memorial Sloan Kettering (MSK) Cancer Center has demonstrated benefits of a web-based care plan for patients with head and neck cancer as a tool to better cope with side effects of treatment.

A web-based tool to help patients with head and neck cancer better deal with effects of their cancer treatment has proved beneficial to patients and doctors, according to a HHC doctor involved in developing the tool and studying its effectiveness.

“The compelling reason to do this work is because head and neck cancer has changed,” said Dr. Andrew Salner, medical director of the Hartford HealthCare Cancer Institute at Hartford Hospital, HHC’s lead doctor on the joint study with MSK.

Head and neck cancer, once mostly associated with heavy drinkers and smokers who had other chronic diseases, is showing up more in younger and healthier patients, he said. That’s because of the prevalence of human papillomavirus (HPV), now the leading cause of the cancers that often target the tonsils and back of the tongue.

HPV is the most commonly sexually transmitted infection in the U.S. HPV is equally divided among males and females, the latter who’ve been getting vaccinated against HPV to prevent cervical cancer, but oral cancers are happening more prevalently and are appearing in males and females, Salner said. As such, boys and girls are now recommended for the vaccine before they become sexually active to hopefully prevent future disease, he said.

Immunization rates were 38 percent for boys and 50 percent for girls in 2016, Salner said.

Most people with HPV will not develop cancer, according to HHC, but for those who do, treatment outcomes are good, but the effects of head and neck cancer treatment can cause difficulty with taste and swallowing, dental problems, jawbone injury, underactive thyroid and other issues, Salner said.

The study of 43 head and neck cancer patients in Hartford and New York tracked the benefit of a web-based care plan tailored to their specific cancer, treatment and side effects. Historically, so-called survivorship care plans were fairly generic in addressing issues patients might or might not encounter, Salner said.

“This study was unique because it personalized the side effects for the tumor site and the treatment for each patient,” Salner said. It offers specific effects to watch for, some of which may not show up for years after treatment, ways to help prevent problems, cope with treatment side effects and timelines for follow-up medical screenings.

“The patients really appreciated all components of the care plan,” which also included a 60- to 90-minute meeting to review with medical staff.

HHC and MSK are talking with the National Cancer Institute to do a much wider study of the care plan, Salner said. He also wants to examine how to scale up the plan for larger populations and integrate it into patients’ medical records.

Salner and Dr. David Pfister, chief of head and neck oncology services at the MSK Cancer Center, will discuss the study and link between HPV and head and neck cancer in a talk this afternoon, from 4 to 5, at the Hartford Hospital Wellness Center at Blue Back Square, West Hartford.

The number of men diagnosed with head and neck cancer caused by human papillomavirus has skyrocketed. This report found that 11 million men and 3.2 million women in the United States are infected with some type of oral HPV and oncologists say it’s leading to more head and neck cancer in men.

“From the 1970’s to today, the prevalence of this HPV-related head and neck cancer has increased by three to five percent per year from then until now, and it is continuing that same rate,” said Oncologist Jerry Barker, Jr., M.D. at Texas Oncology.

“This is a silent epidemic. Most patients who are exposed to this virus, they don’t know it. They’ll never have symptoms from it, but some of those patients will move on to develop a cancer,” said Dr. Barker.

Jeff Busby, of Weatherford, is one of those patients. The aerospace engineer and owner of Busby Quarter Horses says he was diagnosed with throat cancer in February of 2016. His wife Andrea, who documented their journey here, says they were both shocked.

“We were just busy living life. You don’t ever think that shoe is going to drop,” said Andrea.

Jeff says the symptoms began as pain in his ear which lead to pain in his throat. Nine months later, he had a biopsy done on what was a mass in his neck.

“I had just been toughing it out and my partner said, ‘hey, you can’t just tough these kinds of things out. You’ve got to go get this checked out,'” said Jeff.

“It was the cancer putting pressure on and radiating nerve pain to the ear. There was nothing wrong with the ear whatsoever,” said Jeff.

A biopsy revealed Jeff had throat cancer caused by the human papillomavirus, the most common sexually transmitted infection.

Jeff was likely exposed in his teens or 20s, but now decades later, created a cancer with one of the most gruesome treatment protocols. He needed surgery to remove his bottom teeth and part of his jaw, 35 radiation treatments and six rounds of chemotherapy.

“I couldn’t let any of my energy go towards feeling sorry for myself because I had to have every amount of energy I had to beat this thing,” said Jeff.

Jeff had never heard of HPV before, while Andrea says she thought it was linked to only cervical cancer.

While pap smears screen for cervical cancer, there is no screening for hpv-related head and neck cancer and that may be part of the reason rates of hpv-related head and neck cancer has surpassed the rate of hpv-related cervical cancer.

There is way to stop the epidemic. The HPV vaccine is recommended for children as early as 11-years-old and young adults as old as 26 years of age. However, according to this study, in Texas, only 35 percent of children get the vaccine.

“Somewhere along the way, these vaccines developed the idea that they had to do with human sexuality and preventing a sexually transmitted disease, but in reality, they are designed to prevent cancer. These are cancer vaccines,” said Dr. Barker.

“If you could just see what some of our patients have to go through to cure one of these cancers, you would run to get the needle in the arm to prevent that from happening to one of your children.”

At 55, Jeff never had the chance to benefit from the vaccine, approved for use in 2006. He’s now cancer free and in some ways, he says, life is better than before cancer.

“I thank God for this challenge and I still wouldn’t change it today. I wouldn’t take it all away because I didn’t think I could be closer to the Lord or to my wife and I certainly have a much better relationship with both,” said Jeff.

He and Andrea are focused on raising vaccination rates and preventing the kind of cancer battle they fought from from happening to someone else.

“There are so many parents that even hear about but still choose not to do it. It’s beyond me. I can’t understand that,” said Jeff.

“Whether it gets a kid vaccinated or somebody sitting on their couch goes, ‘I have ear pain when I swallow. I should go to the doctor.’ That’s why we are doing this,” said Andrea.

The Centers for Disease Control estimates that most Americans have some type of HPV strain but not all strains lead to cancer. Some of the symptoms are head and neck cancer include ear pain, difficulty swallowing and a painless lump on the side of the neck.

The HPV vaccine is safe and effective at preventing human papilloma virus, according to the longest investigation ever conducted on the relatively new shot. While the vaccine has been a success in every study since it came out in the US and the UK in 2006, the medical community has been keenly waiting for some long-term data to show its lingering benefits.

Today, Augusta University’s 10-year study was published in the journal Pediatrics, appearing to confirm the findings in every other short-term report. The data also supported the view that the vaccine should be administered to both boys and girls from the age of nine years old, despite previously only being offered to girls.

Experts say they hope the findings will help drive up rates of children getting the vaccine, which protects against HPV and therefore HPV-linked cancers such as throat, head, neck, penis, and cervical cancer.

‘The vaccine was virtually 100 percent effective in preventing disease in these young individuals,’ says Dr Daron G. Ferris, professor in the Department of Obstetrics and Gynecology at the Medical College of Georgia and at the Georgia Cancer Center at Augusta University.

HPV is the most common sexually transmitted infection in the US and the UK with an estimated 14 million Americans infected every year, and a third of British adults. While about two-thirds of infected individuals can eventually clear the virus, it persists and can cause a wide range of health problems in the remainder, including a whole host of cancers.

The researchers tracked 1,661 people in 34 sites across nine countries, assessing the effectiveness of the three-shot vaccine – which is the format offered in the US, while UK citizens get a two-shot vaccine.

At first, a third of the participants received a placebo. But within 30 months, they also received the vaccine. They started assessing the patients for signs of HPV – genital warts, precancerous or cancerous growths and other infections – from three-and-a-half years into the study.

Those assessments were carried out twice a year for the next seven years. But by the end of the study, all participants were still disease-free. Notably, those who received the vaccine earlier had a more robust resilience to the virus, judging by the amount of infection-fighter cells in their blood.

‘Now we need to push for more young people to get vaccinated,’ he says. ‘We are doing miserably in the United States.’

The virus is typically spread through vaginal and anal sex and can develop into cancers in the vagina, penis, throat and anus. Nearly all men and women will be contracted with one form of HPV, there are an estimated 150 types, in their lifetime, according to the CDC.

Annually an average of 38,000 cases of HPV-related cancers are diagnosed in the US. Of those cases, 59 percent are women and 41 percent are men. But men are more likely to develop a type of head or neck cancer, known as oropharyngeal squamous cell carcinoma, than women.

The CDC recommends for all children in the US to receive the vaccine between the ages of nine and 12. Forty percent of girls and 22 percent of boys aged 13 to 17 years old had completed the three-vaccine series by 2014, the organization found.

In contrast, the National Health Service in the UK recommends for only females to receive the vaccination between the ages of 12 and 13. There are no plans to extend the vaccine to males at this time because it is ‘unlikely to be cost-effective’, according to the The Joint Committee on Vaccination and Immunization.

The vaccination was first introduced for females in a three-part series to help prevent against cervical cancer that forms in the cervix. Cervical cancer occurs from genital HPV, which is skin-to-skin contact during sex.

US men are now encouraged to receive the jab after data revealed they too were at risk from developing HPV and cancers associated with the virus.

Research has also shown that men who give or receive anal sex increase their risk of developing HPV.
Condoms are a protective barrier that health experts recommend for men use in order to prevent the spread of the virus.